{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T01:14:55Z","timestamp":1777598095850,"version":"3.51.4"},"reference-count":17,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2015,5,21]],"date-time":"2015-05-21T00:00:00Z","timestamp":1432166400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"ZonMw","award":["40-41200-98-9131"],"award-info":[{"award-number":["40-41200-98-9131"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Genetics"],"published-print":{"date-parts":[[2016,2]]},"abstract":"<jats:p>As whole exome sequencing (<jats:styled-content style=\"fixed-case\">WES<\/jats:styled-content>) is just starting to be used as a diagnostic tool in paediatric neurology for children with a neurological disorder, and patient experiences and preferences with regard to counselling are relatively underexplored. This article explores experiences and preferences of parents with pre\u2010test and post\u2010test counselling in a trial that uses <jats:styled-content style=\"fixed-case\">WES<\/jats:styled-content> for diagnostics. Second, it maps information and communication needs which exceed the counselling protocol, in order to acquire insight into how it can be improved. Data were gathered through in\u2010depth interviews with parents of 15 children who were included in the trial. Information and communication needs of parents differed from the protocol with respect to (i) the type and amount of information provided about <jats:styled-content style=\"fixed-case\">WES<\/jats:styled-content> research, (ii) incidental findings, (iii) communication about progress of the study, and (iv) the communication of the results. Furthermore, parents preferred to have more of a communicative exchange with health care providers about their daily struggles and concerns related to their life with a diseased child and wanted to know how a diagnosis could offer help. There are different ways to meet parental needs, but we suggest that assigning a case manager might be a helpful option that deserves further exploration.<\/jats:p>","DOI":"10.1111\/cge.12601","type":"journal-article","created":{"date-parts":[[2015,4,28]],"date-time":"2015-04-28T06:20:04Z","timestamp":1430202004000},"page":"244-250","source":"Crossref","is-referenced-by-count":22,"title":["Evaluating a counselling strategy for diagnostic WES in paediatric neurology: an exploration of parents' information and communication needs"],"prefix":"10.1111","volume":"89","author":[{"given":"L.","family":"Krabbenborg","sequence":"first","affiliation":[{"name":"Radboud Institute for Health Sciences Radboud University Medical Center  Nijmegen The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J.","family":"Schieving","sequence":"additional","affiliation":[{"name":"Department of Paediatric Neurology Radboud University Medical Center  Nijmegen The 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